Living With Endometriosishttp://www.livingwithendometriosis.org
Fri, 16 Mar 2018 01:40:44 +0000en-UShourly1https://wordpress.org/?v=4.9.4Real-Life Advice: How These Women Keep Their Endometriosis Under Controlhttp://www.livingwithendometriosis.org/2018/03/15/real-life-advice-how-these-women-keep-their-endometriosis-under-control/
http://www.livingwithendometriosis.org/2018/03/15/real-life-advice-how-these-women-keep-their-endometriosis-under-control/#respondFri, 16 Mar 2018 01:40:44 +0000http://www.livingwithendometriosis.org/?p=1546Real-Life Advice: How These Women Keep Their Endometriosis Under Control
18 February 2018 by TORI CROWTHER

Endometriosis is a condition that affects one in 10 women in the UK, yet not many people know what it is, let alone know how to learn to live with it. Endometriosis is a condition in which pieces of tissue like the ones that lines the womb (endometrium) are found outside of the womb. The tissue is commonly found on the ovaries and fallopian tubes, abdomen, bowel, and bladder but can also be found in other parts of the body. It embeds itself on organs and can cause adhesions. The symptoms are varied but common ones include severe pelvic pain, fatigue, heavy and painful periods, and sometimes infertility.

Last year I had a phone call from the hospital calling me in for surgery to remove what could possibly be endometriosis. After many years of doctors’ appointments and misdiagnoses, I was relieved action was being taken, but kept thinking “should I be panicking at this point?” I’ve had a history of multiple medical “setbacks” (as I like to call them) so I was pretty laid back about it all. I was sent home after surgery with an endometriosis leaflet and told I’d be fully recovered from the surgery and disease in three to seven days (spoiler: there is no full recovery or cure for endo and I didn’t know this). Three weeks later, I was still bed bound and completely unprepared for the diagnosis or recovery. I was in my final year at university, writing a dissertation, about to turn 21, and unable to walk more than five minutes. Nevertheless, due to my stubborn nature, I powered through ignoring any post-surgery symptoms, subsequently making them worse. I was ill and frustrated, and eventually I took to the internet to find out how I could help myself.

Endometriosis has no definite cure and has a wide range of symptoms with an average diagnosis of seven-and-a-half years. It is a debilitating condition, but many suffer in silence due to unresolved symptoms or misdiagnosis. Many women feel powerless, labelled hypochondriacs in their journey to diagnosis. Despite the increasing recognition and awareness for the disease, there is little to actually help women live through their symptoms happily. Painkillers and rest may help, but life goes on and many of us have to work through our symptoms regardless of our current health status. Sharing can help immensely with empowering women physically and mentally to live a fulfilled life with the condition.

I asked nine women who suffer from endometriosis to share their tried-and-tested tips and hacks on how to live happily and as free of pain as possible. Even if you don’t suffer from endometriosis, these tips could help ease period pain or simply help you understand the condition a bit more.

Remember, it is your body, your choice

Become your own health advocate: “Take time to research your condition to find out what treatments are available to help you heal medically, physically, and holistically.”

Diary: “When seeing your GP or consultant take a pain and symptom diary with you and don’t leave until you are comfortable with the options you have been given.”
– Katie, London

Join a support group

Exercise for a better YOU: “When it comes to working out I’ve often resorted to extreme of overdoing things by working out every day or doing nothing at all. It took me along time to realise that neither approach has worked well to enable me to be the healthiest version of myself”

Communicate: “I’ve spent much of my time pre- and post-endometriosis diagnosis feeling really scared and frustrated that many of the people in my life just don’t seem to get what I’ve been going through . . . In my experience, a problem shared is often a problem halved. Joining a support group has been the single best and biggest thing that I have done to support myself on this journey with endometriosis. Joining a support group can help you find others that share experiences and can offer support and advice.
– Claire, Hertfordshire

Heal through Yoga

Yoga stretches: “Sometimes the pain is there and it’s too late to do the preventative stuff, so it’s about managing the discomfort at that moment. I find gentle yoga stretches are so helpful for this. The feeling of the stretches distracts me from the physical pain and gives my brain something else to focus on.” Find these exercises over on Jessica’s website.

Endo Diet: “I generally follow the endometriosis diet and personally, caffeine and sugar are pretty much guaranteed to give me some level of pain. I love coffee, so this is a real work in progress”.

Keep on top of tiredness: “I have disturbed sleep and when it was at its worst, I was seriously depressed . . . my body just can’t cope with the chronic condition, the fatigue that comes with that and being extra tired on top. I now try to get to bed by 10 p.m. . . . I still feel tired everyday, but it’s manageable”
– Jessica, London

Good GP = good referral = good care

Don’t doubt the hot water bottle: “My heat pad or hot water bottle is a godsend. The heat helps any muscular cramps and contractions” Aimee uses heat pads that strap on with Velcro but wears them the wrong way round to get the heat on the pain source lasting hours.

Take it easy and be OK with that: “I have to remind myself it is is OK to do the minimal during a flare. It’s hard not to feel guilt but if I’ve had to take strong pain relief and still struggling with the pain, sometimes there’s nothing else for it than climbing back into bed or having a duvet day.”

GP: “Try to get a GP that understands endometriosis or at the very least gynaecology-related problems and can help with referrals, sick notes, prescriptions, and even accommodate with emergency appointments if symptoms are severe.”
– Aimee, Nottinghamshire

Quit being so hard on yourself

Heat, heat, heat: “If all else fails, get a hot water bottle and give it a good old hug. Get Netflix on, and sit with the hot water bottle over your pelvis with microwavable wheat bags for neck and shoulder pain.” Don’t forget that go-to period pain favourite, the hot water bottle, sometimes it can be the best pain reliever.
It’s not your fault: “If you catch your inner voice telling you, you ‘should’ be able to do things you can’t, stop, take a breath and think to yourself ‘what would I say to a friend?’ It’s likely a friend would tell you are incredibly strong and to give yourself a break.”
– Laura, London

Try everything once

Get online: “Having a chronic illness can be super isolating and quite often you’ll feel like the only person facing all these issues, but getting online and speaking to other women, helping them and getting the same in return has been the best support system I could have ever wished for.”

Pace yourself: “Take a few minutes out of whatever you are doing to have a little rest. You aren’t a superwoman and you can’t do everything at once and that’s perfectly okay.” This is a tip everyone needs to remember once in a while.

Try everything once: “We all have our doubts from time to time over the treatment options we are offered by our healthcare providers. Remember, just because it didn’t work for one person doesn’t mean it won’t work for you!”

Rethink that coffee and wine: “Try to cut back on caffeine and alcohol as much as possible. A boring one I’m afraid, but alcohol always made my endo angry!”
– Shireen, Leicestershire.

Acceptance

Build a support network: “An important part of the journey is allowing yourself to get both help and support from others. This has been vital to me. Acceptance is not about giving up but recognising that you may need to do things differently than you have done in the past.”

It’s not an excuse: “One thing I was worried about with going public with my disease was people’s perception of me changing. As mentioned previously, I don’t want to appear weak or incapable of doing things. I don’t want people to think I am using my disease as an excuse for not meeting up, or pulling out of a gym session, or not getting into work for the day.”

Vitamins and supplements: “One of the symptoms I have struggled to adjust to the most is the dizziness. I now take Bioglan Women’s Multi-Vitamins on a daily basis; they have given me a huge sense of relief.”
– Amy, Essex.

Bring help

Heat pads: “I won’t go anywhere without carrying heat pads on me. The best I have found if you are active/at work are the ones that strap right round your stomach and back. They last for a good eight to 10 hours. I keep them in my draw at work, and even knowing they are there for the bad days is a comfort!”

Appointments: “I have found it much easier if I write notes/chat with a family member about any up and coming appointments. I take the notes in and refer to them if necessary. Most of our symptoms are complex and it’s good to be able to explain them in detail. I also bring someone in with me if I can so they can remember/write notes during the appointment. And don’t be afraid to ask the consultant questions!”
– Beth, Cardiff.

Read up

Don’t wait: “I was diagnosed right before my wedding and was distracted and in denial that I was sick, so waited too long to get help.”

Experienced Doctors: “The hardest thing was finding a good doctor. Few doctors are really experience in Endometriosis. Don’t give up and continue to advocate for yourself until you find a good doctor. Dr. Seckin, an Endometriosis specialist in NYC wrote a book about treatment and advice.”

As she took what she would later call the worst shower of her life, the college sophomore experienced a wave of excruciating abdominal pain.

It would take years for doctors to take that pain seriously. Even as her body withered, her hair turned gray and she dropped out of college because of her precarious health, Norman’s providers insisted she was imagining things.

Eventually she set out on her own investigation of her symptoms, scouring through medical literature for answers.

“Ask Me About My Uterus,” subtitled “A Quest to Make Doctors Believe in Women’s Pain” and published by Nation Books this month, reveals Norman’s struggle for a diagnosis — endometriosis — and a meditation on how health-care providers can ignore women’s pain.

Endometriosis, in which the uterine lining grows outside the uterus, is thought to affect more than 11 percent of American women between ages 15 and 44. Yet it’s underdiagnosed and little understood.

Women with endometriosis aren’t the only ones whose pain and other physical symptoms are underestimated by doctors. Women report more chronic pain than men, and when they report acute pain, women are more likely to be prescribed sedatives than pain medications.

Even when they do receive diagnoses, women report being dismissed as overly emotional when they insist on appropriate treatment. For years, scholars and patients have cried bias, but physical pain is often paired with a fight to be taken seriously by medical providers.

Norman, now a science writer, articulates her own struggles with clarity and calmness. She weaves in historical context about the diagnosis, treatment and perception of women in medicine, from the myth of “hysteria” to cultural perceptions about women’s pain tolerance and propensity for “female troubles.”

In a way, “Ask Me About My Uterus” is an extension of Norman’s terrible shower — a torrent of disconcerting information about the continued struggle to understand and value women’s bodies. Norman hopes to use that information to destroy misconceptions and pave the road for change. “It is my sincerest hope,” she writes, “that some of what is in this book will no longer be applicable by the time it’s in your hands.”

]]>http://www.livingwithendometriosis.org/2018/03/14/ask-me-about-my-uterus-insists-that-doctors-take-womens-pain-seriously/feed/0Why Do We Know So Little About Endometriosis?http://www.livingwithendometriosis.org/2018/03/07/why-do-we-know-so-little-about-endometriosis/
http://www.livingwithendometriosis.org/2018/03/07/why-do-we-know-so-little-about-endometriosis/#respondThu, 08 Mar 2018 05:55:06 +0000http://www.livingwithendometriosis.org/?p=1538Why Do We Know So Little About Endometriosis?
By
Nina Bahadur
March 7, 2018 4:00 pm

Endometriosis is one of those things you’ve likely heard of but may not know much about. And that’s not your fault; the condition itself is sort of mysterious—even though as many as one in 10 women have it, according to the American College of Obstetricians and Gynecologists, and as the National Institutes of Health reports, anyone who menstruates is at risk. The trouble is, endometriosis presents very differently for different people, which can make it difficult to diagnose in the first place.
Experts also aren’t sure exactly what causes endometriosis, and there isn’t one right way to treat it. So—how do you know if you have endometriosis, what does it feel like, and what can you do? Here’s what we do know.

What is endometriosis, anyway?
Endometriosis is a condition that causes uterine tissueuterine-like tissue to develop outside of the uterus, perhaps on your ovaries or fallopian tubes. Hormone changes during your cycle cause this tissue to thicken and bleed along with your period every month, but since it’s not inside your uterus, it has nowhere to go. This can cause swelling, pain, and internal scarring (caused by inflamed tissue trying to heal). This may sound alarming on paper, but the symptoms can show up differently for everyone—and they aren’t always severe.

What are the symptoms?
That depends. According to the Mayo Clinic, common symptoms include painful periods; pain during sex, urination, or bowel movements; superheavy periods, and bleeding between periods.

Mary Jane Minkin, M.D., a clinical professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences at the Yale University School of Medicine, says that endometriosis pain is really personal and specific to each person who has it. And in her experience, there’s no obvious link between the physical amount of endometrial tissue present in the body, and how intense the pain feels.

“Endometriosis can present with gigantic—I mean basketball-size—cysts on the ovary, and the woman can have zero pain,” Dr. Minkin says. “Then some unfortunate folks have implants of endometriosis that look like cigarette powder burns, and they can have awful pain.”
Another confusing thing about endometriosis, Dr. Minkin says, is that there’s no one specific type of pain associated with it. Stabbing pains, achy pains, period-cramp-like pains, and radiating pains are all possible. So is no pain at all.

Because cysts can grow painlessly, some go undetected until a doctor is examining a patient for other related issues (trouble conceiving or staying pregnant, for example). The National Infertility Association estimates that 40 percent of women with endometriosis will have “some varying degree of infertility.” However, research suggests that while endometriosis can make getting pregnant a little more difficult, it will rarely completely prevent it.

Endometriosis can be hard to diagnose.
Singer-songwriter Halsey said she experienced “years of suffering” before she was diagnosed with endometriosis. In a 2016 tweet, she shared that she spent those years “finding myself doubled over backstage in the middle of my sets, or fighting back tears on an airplane, or even being in so much pain I would vomit or faint.” Halsey recalls doctors’ misdiagnosing her or dismissing her pain, and says that finally being diagnosed was a bittersweet experience. “I wasn’t crazy! I wasn’t a ‘baby!’ I had every right to be feeling like the world was caving in,” she wrote. And her experience is pretty typical.

There are a few reasons for what experts call the diagnosis gap. The first, according to Sandra Gelbard, M.D., an internist and chief medical officer of the Endometriosis Foundation of America, is that many people just don’t know about endometriosis. So they may not be looking for it. Plus, its symptoms can be similar to those of other conditions, like irritable bowel syndrome, a condition called dysmenorrhea (or super-painful periods), polycystic ovary syndrome (PCOS), and more. Because endometriosis can only definitively be diagnosed through a laparoscopy (that’s when you go under general anesthesia so your ob/gyn can look around your pelvis using a fiber-optic camera), doctors may treat other possible conditions first.

Another obstacle to diagnosis, which Halsey touched on, is that health providers may dismiss women’s pain or assume they are overreacting.

New York City psychiatrist Julie Holland, M.D., has seen this happen firsthand. As she previously told Glamour: “Doctors used to tell women they were being hysterical; now the code word is stress.

But by telling a woman she’s just stressed, it negates her entire experience, and unfortunately, this also means doctors don’t get to the root cause.” Because it’s not so clear-cut, a condition like endometriosis can require advocating mightily for oneself, which is especially crucial if you feel your symptoms are being overlooked or underestimated.

How do you treat something so nebulous?
There are two main components to endometriosis treatment: Treating the pain caused by the condition, and addressing the endometriosis tissue itself.

For pain management, over-the-counter medications can help some people. Nonsteroidal anti-inflammatory drugs (NSAIDs) can reduce inflammation and pain, and common painkillers may bring some relief. For other patients, OTC drugs barely touch the pain endometriosis causes, and they may need opioids, a much stronger class of drugs.

Some patients are prescribed supplemental hormones like progesterone, which are thought to work by stopping the growth of endometrial tissue. Birth control pills or patches that suppress your period can also prevent endometriosis tissue from thickening and bleeding along with the uterine lining, which may reduce or even eliminate the pain.

If medication doesn’t work, or patients are trying to get pregnant and can’t use hormones, endometriosis is also treated with surgery, and there are two courses of action here: Patients can have what’s called a conservative surgical procedure, in which a doctor removes endometriosis lesions (though, according to the Cleveland Clinic, endo tissue may grow back). Or in severe cases, sufferers may have a complete hysterectomy — as was the case with Lena Dunham, who recently revealed that she had a hysterectomy at age 31 after battling endometriosis for a decade and undergoing eight prior surgeries.

Bottom line? Trust your gut, and listen to your pain.
If you are at all worried that you might have endometriosis, talk to your gynecologist about your symptoms. It’s important to remember that the condition can affect people differently and that there are multiple options for treatment and pain management. So many things vary when it comes to this condition, there’s no need to assume the worst, and certainly there’s no need to just live with it.

]]>http://www.livingwithendometriosis.org/2018/03/07/why-do-we-know-so-little-about-endometriosis/feed/0It Looked Like a Familiar Case of Depression, but Could It Be Something Else?http://www.livingwithendometriosis.org/2018/03/06/it-looked-like-a-familiar-case-of-depression-but-could-it-be-something-else/
http://www.livingwithendometriosis.org/2018/03/06/it-looked-like-a-familiar-case-of-depression-but-could-it-be-something-else/#respondTue, 06 Mar 2018 13:39:21 +0000http://www.livingwithendometriosis.org/?p=1536I am sharing the article below because women with endometriosis have a higher chance of developing cancer of the ovaries, uterus, breast, brain and endocrine system, as well as Non-Hodgkin’s Lymphoma.

“Have you been to see your doctor?” the woman asked her 72-year-old mother anxiously. Her mother had come from Miami to visit her in New York. They hadn’t seen each other for a couple of months, and her daughter hardly recognized her. Her mother had been slender; now, she looked emaciated. Her usually bright eyes peered dully above her newly prominent cheekbones.

But it was more than that — the unrelentingly cheerful, energetic, outgoing woman she had known her entire life had disappeared. Now her mother spoke of nothing but how awful she felt and spent most of her day in bed.

A Vacation Gone Wrong
It started a couple of months earlier when the mother and her partner were traveling in Italy for a month. While there, she began to feel irritable. She had fallen in love with this man eight years earlier — two years after the sudden death of her husband. And their years together had been happy ones. But on this trip, everything about him, about their relationship, began to grate on her. Suddenly she didn’t want to travel with him; she didn’t even want to see him. Indeed, she didn’t want to see anyone.

When she got home, she felt no better. She was a psychologist and recognized the symptoms of anxiety. She had never felt this before, but she had seen it in her patients. She went back to the psychiatrist she saw a few times after her husband died. Yes, the therapist agreed, she did seem anxious. She was also depressed. The woman accepted the psychiatric diagnoses, but told her therapist that it wasn’t just her mind; her body felt like it was too fatigued to do the work of living. But of course, the therapist told her, your mind is part of your body. People, especially older people, often feel symptoms of depression in their bodies — feeling sick and tired rather than sad.

The Medications Begin
The woman started taking an antidepressant and saw the psychiatrist once a week. When that didn’t help, the psychiatrist tried another drug. When she was still no better, she saw another psychiatrist, who added an antipsychotic. By the time the mother went to visit her daughter, she was on four medications: one for anxiety, two for depression and one for her insomnia. Yet she remained anxious, depressed and unable to sleep.

Upon returning home to Miami, she went to her doctor. When Dr. Mitch-Gomez saw her patient, she, too, was alarmed. She had lost weight. And she seemed to have lost so much more; she slouched in her chair as if it were too much work to sit up straight. During her routine physical five months earlier, the woman was her normal, lively self. Now she was a skinny, sullen shadow.

A Battery of Tests
The patient explained to Dr. Mitch-Gomez that she had suddenly developed anxiety and depression. She was taking four medications and meeting with a therapist, and still she felt terrible. She gave up her daily morning exercise class because she didn’t want to see anyone. She wasn’t suicidal, but she couldn’t bear feeling like this for the rest of her life.

She was one of the last patients of the day, so Dr. Mitch-Gomez settled in for a full investigation. The patient had a few vague complaints — she felt nauseated sometimes and occasionally awoke covered in sweat, as if she were going through menopause again. To Dr. Mitch-Gomez, it seemed clear that something beyond depression had to be going on. Although the patient was focused on the psychiatric symptoms, her doctor was worried about the fatigue, nausea, weight loss and sweat. The patient was treated for breast cancer nearly 15 years earlier. Could it have come back and invaded her liver, lungs or brain? It would be unusual after so many years, but not impossible.

Finally, a Clue
If not cancer, what? Hypothyroidism is common in older adults. So is Vitamin B12 deficiency. Each can cause depression. She frequently visited the Northeast; could this be some form of advanced Lyme disease? She sent the patient to the lab for blood tests and ordered a chest X-ray, a scan of her brain and another of her abdomen and pelvis.

The blood tests came back quickly. Her thyroid was normal; so was her vitamin B12. It wasn’t Lyme. The chest X-ray showed nothing. The head CT was completely normal. But the scan of the pelvis was not. There was an abnormality around the left ovary and uterus. A transvaginal ultrasound revealed a small mass on the ovary. After some testing, a gynecologist recommended removing the ovary and uterus.

The patient’s partner heard the news before she was even out of the O.R.: It was ovarian cancer, which had spread to a fallopian tube. But the surgeon assured him that they had gotten it all.

The patient no longer had cancer, but, she was still depressed. Dr. Mitch-Gomez referred her to a psychiatrist who specialized in cancer and depression. She wasn’t sure how the two were related — but it would be an odd coincidence, she thought, if they weren’t.

The Depression-Cancer Link
The patient went to see Dr. M. Beatriz Currier, an expert in the biochemical connection between cancer and depression. Patients with cancer are up to three times as likely to have depression as those without cancer, Dr. Currier told her new patient. It’s not simply that having cancer is depressing. It is that some cancers — perhaps most of them — can trigger the body to release chemicals that signal the brain to develop depressive symptoms. It’s a phenomenon first reported in 1931, when Dr. Joseph Yaskin, a neurologist at the University of Pennsylvania, published a case series on four otherwise-healthy middle-aged patients who were initially thought to have a late-onset depression and anxiety and who within months were found to have pancreatic cancer. The depression, Yaskin hypothesized, was a reaction “on the part of the central nervous system to the toxic or metabolic changes produced by the progressive visceral condition” — the cancer.

More recent research suggests that the body’s response to an injury like that caused by a tumor or an infection is to release messenger chemicals known as cytokines. These messengers communicate with other parts of the body — the immune system, the brain, the gut — to trigger a response to that injury. Different messengers elicit different responses, and the cytokines triggered by certain cancers have been found to set off not only a robust immune inflammatory response but also the neurological changes that cause depression. Some researchers hypothesize that the behavioral changes caused by depression and anxiety — lethargy and avoiding contact with others — might have provided a survival benefit in the face of infection or injury.

Your body released a flood of cytokines in response to the invasion of abnormal cells, Dr. Currier told her, and these chemicals triggered your brain to become depressed. For the first time in months, the patient felt a flicker of hope.

Hearing that she was depressed for a reason somehow made the depression a little easier to bear. With the cancer gone, she asked Dr. Currier, would her depression subside? That’s the theory, Dr. Currier agreed.

And it did, slowly, over months. During the last year Dr. Currier has weaned the patient off the psychiatric medications she was taking. She gained back her lost weight. She started going to her exercise class again. “I’m back,” she told me triumphantly — and it’s all thanks to her doctor, who suspected that what looked like a familiar depression could be something more.

Lisa Sanders, M.D., is a contributing writer for The New York Times Magazine and the author of “Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis.” If you have a solved case to share with Dr. Sanders, write her at Lisa.Sandersmd@gmail.com.

Dolores Gallegos finishes setting up the merchandise table for the Rewind to the 80s fundraiser for Team Doe for Endo at The Warehouse Bar Saturday, Feb. 10.

Las Crucen Dolores “Doe” Gallegos, 47, suffers persistent, often-crippling pain, all thanks — or no thanks, rather — to a disorder called endometriosis.
Gallegos was first diagnosed when she was a student at New Mexico State University in 1990. She was making frequent trips to the student health center because of debilitating abdominal pain. She hit a lot of dead-ends before she found out the actual cause. Her pain was initially attributed, incorrectly, to menstrual cramping.

“I couldn’t walk,” Gallegos said, describing the impact of the pain. “At NMSU, a doctor told me: ‘Just take a handful of Advil.'”

But a physician in El Paso was finally able to determine the real cause as endometriosis, a disorder in which the tissue that normally lines the uterus grows outside the uterus in the body cavity.

“I didn’t even know what endometriosis was when I was diagnosed,” she said. “In 1990, I didn’t know anybody who had endometriosis besides myself.”

For Gallegos, that was the start of a long journey full of not only physical pain, but emotional disappointments caused by the disease. She’s endured 13 surgeries, failed treatments, financial struggles because of high medical expenses and, perhaps the most devastating to her, infertility.

Even today, there are still plenty of gaps in the scientific understanding of endometriosis. But nearly 30 years ago, even less was known about it. Gallegos could only find one book in the library about it. Slowly but surely, she began learning more about the disorder. And today she’s become an active advocate pushing for a cure. She said she’s known more about endometriosis than some of her past doctors — a few of whom had not only a lack of knowledge, but misinformation about it. At least one doctor dismissed her claims of constant pain as a psychological problem, she said.

Raising awareness in March

An estimated 176 million women worldwide have endometriosis — about one in 10 women during their reproductive years. March marks Endometriosis Awareness Month across the globe.

Dolores Gallegos, who was diagnosed with endometriosis 28 years ago, raises funds at The Warehouse Bar so she can attend the Worldwide Endometriosis March in Washington, D.C. (Photo: Maggie Adams/For the Sun-News)

Each month, the lining of the uterus — tissue called endometrium — normally thickens in preparation for possible pregnancy. If pregnancy doesn’t happen, the lining is shed, resulting in a woman’s monthly period.

One theory suggests a possible cause of endometriosis is menstrual fluid and endometrial cells moving the wrong way out of the uterus, flowing out the fallopian tubes and into the body cavity where there’s no exit. Endometrium can then start to grow outside the uterus on other organs or tissues.

The cycle that endometrial tissue goes through is under the control of hormones that originate in the ovaries, located next to the uterus, said Las Cruces physician Anthony Levatino, professor of obstetrics and gynecology at Burrell College of Osteopathic Medicine. The hormones disperse throughout the body, he said.

“They’re not just in the lining of the uterus,” he said. “So endometrial tissue anywhere else in the body where it doesn’t belong can respond in the same way as endometrial tissue right in the uterus.”

That means most of the time, the displaced endometrial tissue continues to cycle through the same build-up and breakdown process each month that the lining of the uterus does. However, the residual, unlike tissue inside the uterus, has nowhere to go. The body can absorb this, but sometimes it doesn’t.

Varying effects

With endometriosis, Levatino said endometrium tends to build up around the ovaries because they’re the source of estrogen. It’s akin to “running for the groceries,” he said. In especially bad instances, “cystic masses” grow on the ovaries.

“When you open those things up, they look like melted chocolate,” he said. “And the reason is that it’s old, broken-down blood. This is one of the reasons that some of these people have a lot of pain.”

Levatino said the amount of endometriosis a woman has doesn’t necessarily correspond to the level of pain she experiences.

“It’s unusual in that sometimes the tiniest little bits of endometriosis can cause the most pain,” he said. “I’ve had patients that were absolutely dying of pain, and you get in with a scope so you can see these areas, and they have literally three pinpoints of it. I had another lady that had so much of it we were scooping it out in handfuls, and she had no pain at all.”

Gallegos described her pain as feeling like a “tumbleweed made out of barbed wire” is inside her and is moving around.

Symptoms of endometriosis

Some of the possible symptoms of endometriosis include painful menstruation, painful intercourse, painful bowel movements, excessive bleeding during menstruation and bleeding between periods, according to Mayo Clinic. Infertility is another possibility, because endometrial tissue and damage done to organs or tissues because of it, can interfere with normal reproductive processes.

Gallegos said that was a devastating part of her own struggle with the disease.

“It’s a huge emotional thing,” Gallegos said. “I took it very hard not being able to have kids.”

She said she’s friends with another woman with endometriosis who was pregnant with twins but lost one of them, likely because of the disease.

Another characteristic of endometriosis is that it can travel to other organs in the body, Levatino said. It’s rare, but it happens.

“Endometriosis has been found in the brain, in the lungs,” he said. “You would think it was a cancer that way, but it’s not. It travels probably in the blood system or lymphatics — we’re not sure which — and it can show up in other areas. Normally you would associate that behavior with a cancer. But it is not a cancer.”

In the past 28 years, Gallegos said she’s undergone 13 surgeries — 10 of which were directly because of the endometriosis and three of which were to correct mistakes or complications from earlier surgeries. One of the surgeries was a hysterectomy, the removal of her uterus. She’s also taken a range of medications over the years. Once she participated in a trial for a drug. None of the surgeries or medications have been successful in the long term for alleviating her pain, and some of the drugs had negative side effects, she said.

The last surgery Gallegos underwent was five years ago. A specialist in Arizona removed endometrial tissue. For two weeks afterward, the pain disappeared. But it soon returned. Gallegos said she’s decided not to have additional surgeries. She’s prescribed a painkiller called Tramadol.

“Sometimes it works,” she said. “Sometimes it doesn’t.”

Mostly, Gallegos just attempts to carry on her normal daily routine in spite of the pain.

Because endometriosis is affected by hormones that control the menstrual cycle, women who do experience pain from the disease may notice it lessen and worsen at different times of the month.

Gallegos said her pain levels did vary in the earliest years, but that variation has lessened. Now, pain is not as great as it was at some points in the past, she said, but it’s more constant than not.

A lot of women who deal with painful endometriosis also experience depression or hopelessness because their quality of life often isn’t good, Gallegos said. Also, some medical professionals don’t take their complaints about pain seriously, which doesn’t help. Family members, too, can feel hopeless because they feel powerless to help a loved one suffering from the condition.

“Nothing is easy about endometriosis, for sure,” Gallegos said. “It wears you down.”

Boosting awareness

Gallegos doesn’t consider herself to be an especially strong person. But she’s determined not to let her often excruciating condition stop her from leading a busy life. As such, she works full time as a juvenile probation officer. And she’s channeled her energy into advocacy efforts, such as fundraising, to boost awareness about endometriosis in hopes of finding a cure.

Five years ago, Gallegos participated in the first-ever national march to raise awareness about endometriosis in Washington, D.C. Women from around the nation gathered for the event, which included a small convention and a performance by Sheryl Crow.

Gallegos said it was uplifting to meet so many other women from different places who shared the common, unfortunate bond of endometriosis. She’s participated in each of the subsequent national marches, one of which took place in San Francisco. She’s met a lot of new friends who she keeps up with on Facebook. And that’s helped to counter the feelings of isolation she and many women with endometriosis experience.

Marching in Washington, D.C.

Ultimately, Gallegos said participants hope to catch the attention of policymakers who can push for strides to be made in research toward a cure for the disease.

“That’s why we march, and that’s why we want to be seen,” she said.

Gallegos and a small group of supporters from Las Cruces — they call themselves Team Doe for Endo — plan to attend the fifth annual Worldwide Endometriosis March this year in Washington, D.C., taking place on March 24. The group has hosted several fundraisers, including t-shirt sales and a recent 1980s night event at The Warehouse Bar in Las Cruces. She said they’re nearing this year’s goal of raising $3,000 to $4,000.

Gallegos has attempted to start a support group in the past but hasn’t garnered enough interest from local residents. She wants to begin speaking to high school or university classes about her experience so other women will be aware of the disease and the possibility that they could be affected by it. She’s hopeful a research break-through could turn the tide in the quest for better treatments.

Endometriosis risk factors
• Never giving birth
• Starting your period at an early age
• Going through menopause at an older age
• Short menstrual cycles — for instance, less than 27 days
• Having higher levels of estrogen in your body or a greater lifetime exposure to estrogen your body produces
• Low body mass index
• Alcohol consumption
• One or more relatives (mother, aunt or sister) with endometriosis
• Any medical condition that prevents the normal passage of menstrual flow out of the body
• Uterine abnormalities
Source: Mayo Clinic